Testosterone, Day 1: The Weight of What it Took

Yesterday should have been Day 1. But when I got home from the pharmacy I didn’t have the heart to even open the bag with my testosterone in it. Instead of excitement, I just felt sad and exhausted.

Exactly one month prior, I had skipped through the pharmacy’s doors with my prescription in hand. (You doubt me? You don’t know me. There was skipping. And giggling. And not-so-surreptitious documenting with my iPhone camera.) But after a month-long circus act on the part of my health insurance provider, the excitement and joy were gone. I felt completely worn down, emotionally drained, my resilience on empty.

The thing to know is this: I have every resource stacked in my favor (short of being independently wealthy or at least financially stable). Here are the things that I am frankly amazed to be blessed with:

An employer with one of the most trans-inclusive health insurance plans in the United States

A dear colleague, administrator of said insurance plan, who is a fierce trans ally and goes out of his way to support trans people seeking care under the policy (plus advocating for more employers to adopt trans-inclusive health plans)

An informed consent clinic within driving distance (and the ability to get to it) where patients are trusted to make the right decisions for themselves with help from supportive providers

A health-care provider who is not only completely genderqueer-supportive, but is also trans (!)

Never have I been more grateful to have been born in the time and place that I was born.

It’s only in the last several years that people like me have begun regularly being able to make the decisions we deserve to be able to make about our health care, supported by providers who are more interested in being helpful than being gatekeepers or worse.

For about four decades, health care for people seeking gender-affirming medical intervention has relied on Standards of Care first published in 1979. Harry Benjamin and his colleagues who originally established these guidelines for providers were doing what they could to help transsexual people get vital care, help that was desperately needed.

These standards have evolved, but even as they’ve been revised (in 1980, 1981, 1990, 1998, 2001, and finally most recently 2011), they have always lagged behind the quickly shifting landscape of transgender, intersex, and gender nonconforming people’s understandings of ourselves and they have unfortunately always perpetuated oppressive dominant cultural norms.

It wasn’t until the most recent revision, only four years ago, that the Standards of Care took concrete steps away from inherently pathologizing gender variance and even acknowledged that genderqueer and other non-binary people like me exist. Not too long ago, in order to get a prescription for testosterone, I would have had to undergo the notorious “real life test” of attempting to live as a man for at least three months or as long as two years (depending on the whims of my provider and the version of the Standards of Care being used). A therapist would have been the gatekeeper and judge as to whether I passed the test and was a viable candidate for hormone therapy.

For many years, trans people who had come before helped others access hormone therapy, coaching each other on what narrative to tell in order to pass the gates. How to present confidence, a consistent life story of being “trapped in the wrong body,” an unwavering sense of (binary) gender identity. How to dress and act in order to present a gender expression that fully “matched” that gender identity in the eyes of the provider. “Trans people, desperate for treatment, learned to conform to the patriarchal, homophobic standards enforced by the gatekeepers they encountered,” says Leela Ginelle.

At Johns Hopkins University, which in the 1960s was the first U.S. medical center to provide gender-affirming surgery for trans people, doctors approved only 1% of requests—24 of the first 2,000 they received. For decades, the only people seen as “viable candidates” for gender-affirming medical care were the ones providers thought would become successful, straight, masculine men and feminine women, perceived as such by everyone around them. “Successful,” of course, is code for all sorts of things in this culture related to race, class, ability, age, and more. The lucky few who were able to access medical transition were advised to cut ties to their former life completely (including families of origin, spouses, children, and friends), avoid associating with other trans people, and start anew (aka completely isolated). You can read more about the Standards of Care, and the 2011 revision, here and here.

Suffice it to say I wouldn’t have passed the “real life test.” I wouldn’t have even made it in the therapist’s door. See, I’m not a man. I don’t feel trapped in the wrong body, I’m not masculine, and I’m definitely not straight. I’m a queer, genderqueer, gender fluid, flamboyant and fierce, bowtie-flashing tea-cozy-knitting roller-derby-playing gay-men’s-chorus-singing motorcycle-riding boi.

So yeah, I sure did skip through the pharmacy doors with that powerful slip of paper a month ago. I didn’t for one second take it for granted. My ability to access hormone therapy came at a high cost to thousands and thousands of my trans siblings who came before me.

But when my insurance company proceeded to disappear the prior authorization paperwork three or four times before finally denying the request under the auspices of it not being FDA-approved for gender-affirming hormone therapy, I felt completely and utterly deflated. The feelings of hopelessness, unworthiness, and invisibility all came rushing back.

In my better moments, I was angry. There is no FDA-approved product for gender-affirming hormone therapy. Every single option is technically an off-label use. If I had an “M” gender marker on my medical records, my health-care provider could easily code the prescription as treatment for low levels of testosterone (quite true!) and no one would bat an eye. I was angry because even though I had an explicitly trans-inclusive health insurance plan, the company was clearly uninterested in fulfilling the terms of that plan. I was angry because I knew that I have more resources than the vast majority of other genderqueer people, and even so I felt like giving up under the weight of what it took to demand that I was worthy and deserving of this care.

My resources won out. Because of my partner (who shamed the insurance company on Twitter with #transhealthfail and held my hand as I made calls to them that were painful and awful), my health-care provider and the whole clinic team (who spent hours on the phone with the insurance company and patiently submitted and resubmitted requests), and my colleague (who pulled rank and reminded the insurance company in no uncertain terms what I was entitled to under the plan), after a month I had my testosterone in hand.

When I got the call from my pharmacy that my prescription was ready, I felt something like resignation or numbness and pushed the news to the back of my brain. When I went to go pick it up I tried to rally, but I couldn’t muster a spring in my step much less a skip of my feet. I got home, put the bag on the back of the toilet next to the tissues and lotion, and went to bed feeling sad and despondent.

Today I felt better. I told myself to shake it off and reminded myself of the excitement I felt a month ago. I told myself that I am worthy and deserving and that this was something I was doing for myself, no matter what the rest of the world said. I instructed my partner to provide fanfare; he did so with style. And I took my first dose of testosterone.

How fierce, and vulnerable, and beautiful (YOU)…I am smiling thinking about that fanfare! And how terrible (insurance company and the systems that keep trans / genderqueer folks from care and the resources needed to affirm their gender. Hugging you hard.